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Ataxia Support

I love Ataxia

Wow, there are so many things that I love about Ataxia. I love when it snows and especially when it turns to ice. I love possibly falling and not being able to get up because of balance problems. I love trying to squeeze through tight places when balance is required.

These are but a couple of things that I love about Ataxia. What are yours?

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I love dropping anything on the floor and staring at it winding how much I really need it. Then when I actually realize I need it and bend over carefully enough to not fall over, I stand up and now have vertigo! Now I have to stand here and out last the vertigo. All because of the tremor in my hands and dropping something I needed. I LOVE Ataxia and all its symptoms!

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So your saying you have both vertigo and ataxia?

Yes. The neurologist explained that it goes along with my migraine neuro symptoms.

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I love being afraid to use a public restroom because 1. I have to walk across the restroom when balance is a problem, 2. I may have to wait in line when standing is a problem, 3. I may have to get wet hands from the sink to the towels with my cane and 4. heavy restroom doors are a problem with my balance. Isn’t this fun!

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Spiritdarter I’ve got ataxia & equalibium together. Not too bad yet. I started out thinking it was vertigo.

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I love having ‘brainfog’ it’s so help with concentration and staying safe :wink:xB

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Now, seriously! I love being able to blame all my stumbling, bumping into things and dropping things on this Ataxia! I pity people that are clumsy and don’t have an excuse! LOL

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Ataxia, there are sooooo many things I LOVE about it, I hardly know where to begin. I love that it effects EVERYTHING, from my gait/ balance, dexterity (writing, printing, fine motor skills), speech (slurred), swallowing, coughing constently/choking), vision (effects focus and vision, as its sometimes blurry). And I LOVE falling, especially when I hit my head, splitting it open and having 9 staples, hairline fractured my pelvis, and tore my meniscus in my knee and having to have surgery repair it, never mind all the bruises! And I LOVE dropping things all the time, as well as the lack of confidence I’ve acquired due to all the falls I’ve taken. And to think I use to be sooooo independent! Everytime I fall, it knocks my confidence down one more peg…,what fun! I use a quad cane and rollator, as I can hardly walk without them, will wonders ever cease?..,ha! And I l LOVE the tiredness almost as much as my stiff muscles! Ataxia is truly a blessing…,NOT…,lol!

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Seriously! I love it that it’s not a terminal disease! If we gotta get something, it’s a blessing not to have cancer! Knock, knock! I’ve had very bad falls as well, but it could have been so much worse! Let’s all stay positive…

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Did you ever try the magnets

Yes, Bobby, I did! I find the extra stimulation of the soles of my feet very helpful! The better you feel where you are in space, the better your balance and coördination. Not sure however, whether this is due to the metal balls sentisising your feet with every step or due to them being magnetic… :wink:

Believe me it’s the magnets getting together with your magnetic field in your body that’s doing it. That’s how the magnets work

I have ataxia due to late onset Niemann Pick C1 disease so it is terminal!!! Life itself is a terminal disease…,ha! Yes, of course I’m glad I don’t have cancer, as my first husband died of cholangiocarcinoma (cancer) and what an horrendous disease, as, yes it could be SO much worse! I’m truly blessed and one of the most positive people you’d ever meet, I’m just sayin’. Merely answering Chaz51’s question. I love having ataxia…,NOT! My best to you…,;o)

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I think we all need to think about the positive. The things we can do, not the things we find difficult. I am not a priest or a do gooder, I am a realist. I have a rare form of Ataxia and have all and more of the symptoms but I WILL NOT LET IT TAKE OVER. If you find relaxing hard then do some meditation. If you get low due to the time of year(perfectly normal in all humans the circadian rhythm I think its called). I have a blue light for low mood and an exercise bike, I have never fallen off it yet!!! Perhaps you have an interest in Reading, arts and crafts, socialising,. The list is endless. We all have this awful disease, DO NOT LET IT RUIN your life. We have one life and lets make the most of it. FIGHT ATAXIA don’t let it win. Motivational talks are available on the box if you need them. Physiotherapists talk about your core strength what about our own mental strength. Peter Ashbourne England

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:slightly_smiling_face: The original theme of this particular discussion, a play on humour which personally made me smile, sadly seems to be losing its way :smirk: Where would we be without trying to make light of the situation :thinking: I would go so far as as to consider whether humour is what gets most of us by :blush: xB

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You said it exactly BP!!! Laughter IS the best medicine.

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I loved this thread. Let’s face it, this disease sucks. I feel like I have to be positive around people so often, that it is nice to be able to be real here. I actually am a fairly positive person, but I am tired of feeling like I have to be.

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:slightly_smiling_face: I love that I’m not alone in needing occasional ‘silliness’. I’m all too aware of the stark facts, and the advice passed down from professionals. There’s plenty of opportunity to be serious on the main forum, personally I hope this thread continues :blush: xB

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I loved having to crawl on my hands and knees over ice the other day to get to my car so I could go to the gym and work out.

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